Dying people deserve more options than emergency and unplanned care

Imagine being alone with someone you love as they near the end of their life. It’s the middle of the night, they’re crying out in pain, and you don’t know who to call.

For too many families, this is reality. Overnight and at weekends, people often can’t reach a prescriber who can get the right pain relief at the right time. Pharmacies are closed, or too far away. This can mean people do the only thing they can and call an ambulance or go to A&E.

After someone dies, we hear from families who carry guilt and pain for the rest of their lives because they couldn’t get things sorted in those final days. But so often, it’s the system that let them down.

Access to care and support closer to home varies hugely across the country, particularly outside normal working hours. That means unequal care at the end of people’s lives. It’s not fair, and it’s not right.

New research commissioned by Marie Curie and carried out by researchers at King’s College London shows that the number of dying people relying on unplanned, emergency care has been rising.

In a single year in 2023, people in their last year of life in England accounted for:

Some of this unplanned care will be necessary and appropriate. But at Marie Curie, we know people may turn to unplanned emergency care when they can't access the support they need at home or in the community.

Behind many of these statistics are patients and families who called an ambulance or went to hospital because, in their time of need, there was nowhere else to turn.

But we have a chance to fix this. The UK Government is due to publish a Modern Service Framework (MSF) for palliative and end of life care in England at the end of this year. It’s a real opportunity to reduce variation and make sure people get the right care, at the right time, in the right place.

The Government aims to cut non-elective admissions and bed days for people at the end of life by 10% over three years. By 2029, this means around 1.15 million fewer unplanned hospital bed days than recent years. We support that ambition. But with an ageing population and growing palliative care need, pressure on emergency care will stay high without urgent action. We need a change in approach.

That’s why we are calling for a palliative and end of life care transformation fund of at least £200 million a year for three years. Five medical Royal Colleges, along with other charities and partners, back this call.

Targeted investment on this scale would help local health systems redesign services and shift resources towards care that delivers better outcomes and avoids unnecessary hospital use. Meeting the 10% aim could generate annual acute trust savings of between £775 million and £790 million. But without investment, it’s simply unrealistic.

Marie Curie is already investing in services alongside GP surgeries and A&E teams to identify people at the end of life sooner, so they get the right support earlier. But scaling up these services quickly needs resources and commitment from government and local health systems.

One of the things we’re calling for as part of this investment is for the UK Government to commit to every part of the country having a 24/7 single point of access palliative and end of life care telephone advice line.

It should be staffed by professionals who can provide advice, guidance and support to access local services, and backed by specialist services to respond to calls. The advice line should be available to everyone with a terminal illness, their carers and the professionals supporting them.

Our research found 69% of areas lacked a consistent 24/7 line. It’s time to close that gap.

Another is skills and personnel. Like in any area of healthcare, effective end of life care services rely on good design, but also the right staff trained in the right ways. Almost every health and care professional will care for someone at the end of life. Yet it isn’t a compulsory part of initial training or CPD for most, and many feel ill-equipped – including paramedics.

That’s why we think palliative and end of life care should be a compulsory part of training for all health and care professionals, including those in primary care and emergency medical services.

Over recent months, we’ve heard a lot of talk about the state of palliative care, and the urgent need for improvements. We’ve seen commitment to a plan to improve care through the Modern Service Framework. But none of this will mean a thing if it can’t be delivered in practice.

A three year transformation fund could make all the difference between a plan that sits on a shelf to get dusty, and one that delivers real transformation for palliative and end of life care services so that more people can get the support they need at home and fewer families are left with nowhere to turn in a crisis.

The choice is clear.